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(Crohn’s) disease of the week

After a half-hour fight with my gastroenterologist last night, he finally agreed to put me on short-term meds to try and control the too-earthly delights I’m currently housing in my 5’2″, 106 lb. (and rapidly shrinking) frame.

While we argue a lot, a function of our positions on opposite ends of the Western Medicine Cures All spectrum, we really do love each other. He calls me stubborn, I call him Graham and, despite my refusal to march with him in pharmacological lockstep, we’ve always come to some kind of mutually satisfying compromise, usually involving my taking some incredibly toxic medication for less time than he’d like and more time than I’d like.

This time, however, we’re running into some unusual problems. This flare I’m in now, which we both agree has its roots in an overly-long, overly-strong course of antibiotics I stupidly took after some minor skin surgery, is manifesting itself quite differently than previous Crohn’s flares, so much so that I’m starting to question whether I have Crohn’s colitis or ulcerative colitis.

There’s a lot of overlap in the symptoms (blood and diarrhea and fever and weight loss and the scent-of-the-dead flatulence no one discusses), and the way my disease presented initially, there was some question as to which disease I had. Frankly, as far as end-user experience goes, pain, medications with dreadful side effects, an illness one will never actually be “cured” of, this rose is pretty stinky, no matter what name it goes by.

Several of the treatments are similar, too: steroids, immunosuppressants, anti-inflammatories. There are more medications approved for use in Crohn’s disease, but finding the right one for either disease is hit or miss.

So now I’m on another, milder course of antibiotics, metronidazole, used to kill certain “bad” bacteria in the gut which are believed to be a contributing factor to Crohn’s disease. And, oddly enough, I find myself hoping I have Crohn’s disease (there’s no known effectiveness for UC treatment), so this antibiotic will spare me the hair-shedding, liver-bashing nightmare of the big gun meds like 6MP.

Me. Hoping I have Crohn’s disease.

The world changes by degree, except when it changes all at once…

xxx
c

UPDATE: I realized after re-reading this with some sleep that the juxtaposition of paragraphs made it sound like a geyser of blood and poop is shooting out of my ass at regularly timed intervals. Alas, no. If it were, things would actually be easier because we’d know what to put me on. As it is, I’m having the regular bowel movements of a healthy, high school football player, with no blood whatsoever. Just fever, aches and endless fatigue. In fact, the only thing that makes me sure this isn’t just fibromyalgia kicking in at a late date is the ungodly flatulence I’m still dealing with. Really. I could kill a puppy with one of my farts.

Between my own compulsive searching and that of friends and relatives, I keep up pretty well with the latest studies.

I’m really not interested in what they’re coming up with at teaching hospitals, since it’s just more of the same: medicate the problem, rather than get to the root of it. What I’d really like is to find one doctor who’d support me in my desire to ultimately manage this disease with dietâ€”and not just any diet, but one that’s helped thousands of people with IBD send their disease into permanent remission.

There’s a group of doctors working in the Chicago area who take a holistic view, but practice Western medicine. Find me one of those out here and I’m there, dude.

And… (with caution about coming off in an irreverent tone) have you tried acupuncture? I did that for a hard while a few years ago here in Santa Monica (for $80/pop) and found relief I’d never before known for things I’d been told would never be relieved (migraines, mainly).

Anyway… just a thought. I hate that you’re having physical BS (again). And I truly hope you’re just an instant away from connecting with that right and perfect person who will help you figure this out for good.

If you happen to want an acupuncture referral, I’ve got you covered on that, FWIW.

Thanks, everyone. Lest anyone get too alarmed, there is no blood shooting out of my ass. No diarrhea this time, either, which is what has me and my GI doc at loose ends about what to do. This flare is distinctly different than the other two I’ve had.

Rick, I’d love it if your friend could point me towards a friendly nation.

And Bonnie, I’ve tried acupuncture, from a really great acupuncturist. I wish I could say it made all the difference, but it just didn’t. Shiatsu is helpful, and I’m going in for a session on Monday. But maybe I’ll hit you up for that name anyway.

Pulling out of a flare so far has meant tons of rest, strict strict strict SCD and meds. We’re just holding off on the big-gun meds b/c, as I said, the symptoms this time are dramatically different. (A “regular” Crohn’s patient? Who knew?)